ty hafan cwtch newletter

cwtch

Newsletter: Spring/Summer 2009

Inside... • Cwtch corner• Throw a birthday bash!• Honoured at Prince's home

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welcome...to the latest edition of our newsletter.

For those of you that are regular readers of Cwtch, you’ll notice the newsletter has a new look and feel. I’m very proud of this as I believe the latest issue captures the very nature of Ty Hafan: it’s bright, warming and full of life and smiles.

So much has happened since the last issue of Cwtch.

Whilst working extremely hard to raise the millions of pounds we need every year to continue providing our unique and vital service, we’ve been busy celebrating our 10th anniversary with supporters, volunteers, donors and the families, children and young people who use our care services.

3www.tyhafan.org

Furthermore, we’ve held our first ever Midnight Sleep Walk and Barry Island Family Fun Run, whilst our volunteers have enjoyed a Garden Party at the hospice and an audience with our Patron HRH The Prince of Wales and The Duchess of Cornwall at their home in Carmarthenshire.

We all share a common purpose and commitment: doing everything we can for the 100s of life-limited children, young people and their families who

depend upon Ty Hafan for comfort, care and support. The money you kindly raise and the time you generously give means so much to them so please continue to help in any way that you can.

Because you care, so can we.

Ray HurcombeChief ExecutiveTy Hafan

providing care, being there4

It is hard to imagine how anyone reacts to losing a child in the first few years of his or her life but for that to happen twice in the same family is totally unthinkable.

In March 2004, Kevin and Samantha Thomas started their family with a healthy bouncing baby boy who they named Joshua. In the summer of 2006, they were delighted when twins Courtney and Fiona arrived on 28 July.

Both girls were born a wholesome weight but while Courtney was perfectly healthy, sadly little Fiona had cerebral

palsy with spastic quadriplegia, scoliosis and intractable epilepsy.

When Fiona was six months old the family were referred to Ty Hafan to enable them to have a break from attending to Fiona’s many complex needs and round-the-clock medication.

Later on, when the twins were about a year old, Samantha became pregnant again, but because the indications were that Fiona's condition was not genetic, they looked forward to the new baby.

In the last stages of the pregnancy, Fiona became very poorly and stayed at Ty Hafan. Samantha went into a slow labour at the same time knowing that her precious little girl was fading away.

Fiona died on 27 June 2008 and the doctors helped to make sure her mum was able to attend and cope with the funeral. Amazingly this young family had the strength to get through this terrible time with love and support from family and friends.

fiona and trystan's story

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On 9 July, Trystan was born a healthy 8lbs 12oz. After such a

tragedy this family now had another beautiful baby to care for. In the first few weeks of Trystan’s life, Kevin and Samantha noticed that he was very stiff in his limbs and having been in that position before they knew instinctively that something was not quite right.

After going through the testing procedure again, Trystan was believed to be suffering from evolving cerebral palsy and seizures.

Having disposed of all the specialist equipment they had needed for Fiona, they had to start sourcing it all over again as well as attending hospital appointments and seeing all the same medical staff who had known Fiona.

Less than a year had passed since Fiona had died when Trystan suddenly stopped breathing while at home with Mum and Dad. Kevin tried desperately to resuscitate him but while the ambulance was on its way, Trystan died in his Dad’s arms.

Kevin says: “Ty Hafan made a huge difference to Fiona’s life and to our lives. They gave us a bit of freedom and a chance to bond as a family with the peace of mind that there was support and people there to help if needed. We found great comfort in talking to other parents who were in similar situations and both staff and parents understood our thoughts and feelings which was a huge relief.

"Our only regret is that we wish we had referred Fiona to Ty Hafan much earlier as she could have benefited for much longer. That is why we made an early referral for Trystan to visit the hospice as well."

This family has been through more than most will in any lifetime but Kevin and Samantha continue to be loving, caring parents to Joshua and Courtney whilst dealing with their inevitable grief. Their children are a testament to the love and care they give as amazing parents and the way they have helped them deal with losing a brother and sister.

Joshua and Courtney now have two little stars to look for in the sky.

for your welsh copy please visit www.tyhafan.org/lets-cwtch


throw a birthday bash!Looking for an excuse to invite your friends round this autumn? Well, we have the perfect excuse for you!

It’s coming to the end of our 10th anniversary, so why not help us celebrate it one last time by raising money with a party or get-together of some kind? Many of our supporters have traditionally held a Butterfly Tea Party for Ty Hafan at this time of year, and we hope they’ll continue to do so, but making it even bigger and better because it’s our 10th anniversary!

But if that’s not your “cup of tea”, perhaps a Safari Dinner Party is more your style? Each member of a group prepares one part of a three-course meal, with everyone travelling around the houses to enjoy each course.

Rugby fans could take advantage of the autumn internationals by inviting their mates round for pizza and beer, and in return for the hospitality, asking for a donation to Ty Hafan.

Families, schools and youth groups might like to join in the fun by holding a Hallowe'en or Bonfire Night Party or disco, thus ensuring young people can take part in these traditional celebrations in a safe and enjoyable way whilst also raising money for a wonderful cause.

www.tyhafan.org 7

Why not make things even more fun? If you are going to hold a party, how about choosing a fancy dress theme? Perhaps Tiaras and Tuxedos? Or Legends of the Eighties? What about a Black and White theme? Or wearing clothes and hats back to front?

Ty Hafan’s Birthday Bash campaign runs from 12 October to 1 November, but you can hold your event whenever it suits you. We can provide posters,

balloons and plenty of ideas and advice to ensure your party is great fun and, just as importantly, raises lots of money!

For further info please visit www.tyhafan.org/fundraising or contact Gaynor Taylor on 029 2067 2095 or email [email protected]


cwtch corner

9for your welsh copy please visit www.tyhafan.org/lets-cwtch

On first meeting six year old Summer and four year old Mabon, from Aberystwyth, you might think they are just like any other young children who seem to have an endless supply of energy and for whom the world holds no fear.

These are, however, symptoms of a condition called San Filippo (a mucopolysaccharide disorder known as MPS). In Summer and Mabon’s case, the enzyme which breaks down their mucopolysaccarides is missing which results in them remaining in the cells causing progressive damage.

Both children are at the first stage of the condition where their hyperactivity can mistakenly portray them as

‘naughty children who are not being effectively disciplined’.

Managing her children’s needs without adequate support on a day-to-day basis is a monumental task for mum Diane.

“At Ty Hafan, my children have that one-to-one care which is often very difficult for me, as their sole carer, to provide at home."

"Staying together at Ty Hafan enables me to just add to their care and spend time with my children, enjoying their happiness. This is a luxury we otherwise would not have.

summer and mabon's story

www.tyhafan.org 11

“The children love having a large space where they can race about freely which they so need. The amount of natural light gives a positive air to the place which also gives a sense of freedom, often so lacking when you’re a lone carer.

“It means I can also use our time there to catch up with paperwork connected to their condition or on rare occasions, just drop my things in my room and sleep, knowing the children are safe and happy.

"When we were first referred to Ty Hafan I was not aware of the breadth of services it provided. In addition to the one-to-one care we receive at the hospice, our Ty Hafan Family Support

worker also helps me deal with other organisations and battles which, as the children’s mum, I have the responsibility to take on for them whilst at the same time attending to them.”

Sadly, Summer and Mabon’s condition means that by the time they reach their teens they will become immobile and will gradually lose the ability to communicate.

It also means that Diane will lose both her precious children before they reach adulthood.

How would you cope?


"It was great to take part in a new and different event which was so well organised.

“Although there were sore feet and aching legs, at the end it was worth it to help raise both money and awareness of such a worthwhile cause. We’re looking forward to the 2010 event and hoping to beat our time!”

newsroomPyjama Party!500 girls and ladies, aged 13 to 73, took to the streets of Cardiff on Friday 1 May for the first ever Midnight Sleep Walk for Ty Hafan.

By walking the eight mile route through Cardiff City centre to the Bay and back again, in their pyjamas, the ladies were showing their support by giving up a night’s sleep to raise over £50,000 so Ty Hafan mums could get a well-earned rest.

The target of 500 registrations was achieved well before the day of the event, proving how popular charity walks have become.

Cassie Munton, Cardiff Airport’s Marketing and PR Manager commented, “The 13 members of the airport team had a great night and thoroughly enjoyed the whole experience.

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members of the public where most of our care service provision is carried out”, commented Jayne Saunders, Director of Care.

“It means so much to us to be able to show the generous people who support Ty Hafan where their money is being spent and the effect that their kindness has on the life-limited children, young people and their families who rely on Ty Hafan for comfort, care and support.”


Family Fun!The last Sunday in June has become an important date in the summer events calendar with Ty Hafan's Family Fun Day growing in popularity year-on-year. This year’s event, which took place on Sunday 28 June, saw nearly 2,000 people coming along to enjoy the fun, including: fairground attractions, police dogs and horses, craft stalls, street performers, face painting and bouncy castles.

Apart from the entertainment and stalls, over 400 people took advantage of guided tours around the hospice to see the wonderful facilities and amazing work carried out by staff and volunteers.

“The Family Fun Day is a fantastic event. Not only is it a great day packed with family things to do and enjoy, but it also allows us to show

You can count on my support.

(Please use BLOCK CAPITALS) Title ................ Forename ...................................................................................

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Help Ty Hafan save money on postage – join our email list!

Here’s my regular gift of:

n £10 monthly n £15 monthly n Other Please state amount £ ............................................. monthly

Please fill out your Direct Debit mandate below and don't forget to tick the gift aid box!

Instruction to your Bank or Building Society to pay by Direct Debit

Name and full postal address of your Bank or Building Society

Name(s) of Account Holder(s)

Bank/Building Society account number

Branch Sort Code

Originator’s Identification Number

2 4 9 5 0 0

Reference Number

Instruction to your Bank or Building Society

Please pay Ty Hafan Direct Debits from the account detailed in this instruction subject to the safeguards assured by the Direct Debit Guarantee.

I understand that this instruction may remain with Ty Hafan and if so, details will be passed electronically to my Bank/Building Society.

To the Manager Bank/Building Society

Address

Post Code

Signature(s)

Date

Banks and Building Societies may not accept Direct Debit Instructions for some type of accounts

Please fill in the form and send to Ty Hafan, Head Office, St Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff CF5 6ES

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I can’t commit to a regular gift, but would like to make a donation:

Please accept a cheque / CAF voucher for £ ……………………………………… payable to Ty Hafan

Please accept my credit / debit card donation:

Debit my MasterCard Visa Debit Card for the sum of £ ...........................................................

Cardholder’s Name .............................................................................................................................................................

Address (if different) ....................................................................................................................................................................

................................................................................................... Post Code ...........................................................................

Card No …………………….…………………………………………………………………..…………...................

Debit Card Issue No …..…... Issue Date ............/.............. Expiry Date ............/.............. CV2 No: .........................

Signature ............................................................................................................. Date .................................................... Increase your donation with the Gift Aid Scheme

n I am a UK taxpayer and I would like Ty Hafan to reclaim the tax on my donation through the Gift Aid Scheme (an extra 28p for every £1 donated). This declaration also relates to all donations I have made to Ty Hafan in the past six years and all donations I make hereafter until I notify you otherwise. For donations to qualify for Gift Aid you must pay income tax or capital gains tax equal

to the amount claimed in the tax year.

Please send me further information on:

Ty Hafan events The Ty Hafan lottery Leaving a gift in my will How my company can support Ty Hafan Becoming a volunteer Starting or joining a “Friends of Ty Hafan” group Fundraising

Other – please specify ................................................................................................................................

Please return this form to: Ty Hafan, Head Office, St Hilary Court, Copthorne Way, Cardiff, CF5 6ES

Ty Hafan values your support and promises to respect your privacy. The data we gather and hold is managed in accordance with the Data Protection Act (1998). We will not disclose or share personal information supplied by you with any third party organisation without your consent. By providing your details, you will be indicating your consent for Ty Hafan to contact you by email, letter or by phone to inform you about future fundraising activities and appeals, unless you have indicated an objection to receiving such messages by ticking a box below.

I do not wish to be contacted by: email telephone post

For office use only ......................... 024170 (cwtch - jul09)

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(if applicable) (last three digits on reverse of card)

Whilst we try hard to ensure your payment will go to the area of support that you have chosen, we may not always be able to allocate funds in this way due to over-subscription or demand. Any over-subscription or surplus from your gift, after all costs of your chosen area of support have been met, will be used for the charitable purposes of Ty Hafan and will be spent for the benefit of the children and families using our care services. Please be rest assured that every gift will help us to continue in our care provision programme and assist in making the lives of the children and young people as comfortable and enjoyable as possible.

£50 a day keeps all things electrical powered at the hospice, like the hoists

Over £2,500 per month pays for some of the important therapies that our children

receive including music and physio

where does your money go?

Whilst we try hard to ensure your payment will go to the area of support that you have chosen, we may not always be able to allocate funds in this way due to over-subscription or demand. Any over-subscription or surplus from your gift, after all costs of your chosen area of support have been met, will be used for the charitable purposes of Ty Hafan and will be spent for the benefit of the children and families using our care services. Please be rest assured that every gift will help us to continue in our care provision programme and assist in making the lives of the children and young people as comfortable and enjoyable as possible.

To keep the hospice warm and cosy it costs £10 for our daily water supply

and £25 a day for our gas supply!£105 a day keeps the hospice

clean and germ free!

£850 a week keeps all the tummies fed at the hospice

Our lotions, potions and disposables cost £46,000 a year!

where does your money go?


giving something backThere comes a point in most people’s lives when they have a little more time available to them, whether it is through retirement, redundancy, taking a gap year or maybe through the loss of a loved one.

If you do have some spare time, perhaps now is the right moment to think about volunteering some of your time to help Ty Hafan which, quite simply, would not be able to exist without its volunteers.

“Like most charities, we rely heavily on the dedication and hard work of our volunteers”, said Elizabeth Read, Director of Fundraising and Marketing.

“Without them we would not be able to run our 15 shops, stage our fundraising events or take advantage of bucket collections when they are offered to us. All of these functions are vital to help us raise the millions of pounds we need every year to offer our unique services to those families that need our help.

“Some of our volunteers have been directly involved at the hospice for many years helping out in the kitchen and gardens. We also have help in our warehouse and more recently have used volunteer expertise to sell some of our more valuable donated goods on eBay.”

www.tyhafan.org 19

Myra Pickford from Llantwit Major is a Ty Hafan volunteer and is a regular helper at fundraising events and helping with bucket collections.

"I started as a volunteer a few years ago. I am so proud to be part of such a wonderful charity and helping to make the lives of all these children and their families less stressful means so much to me. I’ve also made some great friends with other Ty Hafan volunteers. Everyone is so lovely and it’s a great feeling to know that we all share a common aim and commitment."

If you would like to be part of our valuable team of volunteers, please visit www.tyhafan.org or contact Gaynor Taylor on 029 2067 2095 or email [email protected]

If you are already a Ty Hafan volunteer, the children and their families would like to say a very big thank you for all of your hard work and commitment.

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newsroomFamily Fun RunRegistrations poured in for the first ever Ty Hafan Barry Island Family Fun Run, which took place on a very hot and sunny 31 May. With over 300 participants, many of them families, the event turned out to be a huge success.

The event, which has replaced the annual Barry Waterfront 5k run, was made more family-friendly by taking it

off-road and shortening the distance to 3.5k which allowed participants to run or walk according to age and ability.

“It was such a great day; everyone seemed to enjoy themselves and it was fantastic to see so many families take part”, said Event Organiser Alan Drury.

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3Peaks ChallengeOver 70 teams took part in this year’s GEAES Welsh 3Peaks Challenge. To conquer the mighty 3Peaks in one day, the teams started at 4am taking on the colossal Snowdon, before driving to the impressive Cadair Idris (also in Snowdonia) and then continuing south to the immense Pen-y-Fan in the Brecon Beacons.

Having walked a total distance of 20.35 miles and making a total ascent of 9,397ft (2,864m) in 24hrs, the teams collectively raised a remarkable £100,000 for Ty Hafan.


what a fantastic evening!Help us celebrate our 10th anniversary in style...Ty Hafan is proud to announce that the Butterfly Ball will once again spread its wings and flutter in to Cardiff and London.

This unique and entertaining event is your chance to help families in Wales who live with the unbearable reality that their child is not going to reach adulthood.

The Cardiff Butterfly Ball will kick-off at the brand new Cardiff City Stadium on Friday 18 September and the London Butterfly Ball will land at the Riverside Park Plaza Hotel on Thursday 19 November.

Both events attract all ages and include many corporate supporters. They are an excellent opportunity to catch up with friends or business associates.

Your ticket includes a champagne reception, sumptuous four course dinner and a fabulous evening of entertainment. Our special supporters have yet again donated some exceptional auction and prize draw opportunities, some of which are not normally available to the general public.

For additional information or to book your table, please visit: www.tyhafan.org/events or contact Mared Evans on 029 2067 2081 or email [email protected]

don’t forget...the butterfly ballproviding care, being there for short but beautiful lives



the butterfly ball, cardiff

cardiff city stadium

friday 18 september 2009

the butterfly ball, london

riverbank park plaza

thursday 19 november 2009

www.tyhafan.org/events

For tickets contact Mared Evans, Events Fundraiser

Tel: 029 2067 2081 Email: [email protected]

Kindly printed by Hartley Wilprint

don’t forget...the butterfly ballproviding care, being there for short but beautiful lives22

www.tyhafan.org 23

fundraising at workA great way to raise much-needed funds and also increase awareness of Ty Hafan is by getting involved in the workplace.

You can choose us as your Charity of the Year, give via payroll, help sponsor a Ty Hafan event or enter into an agreement to donate a percentage of your profits for certain products or campaigns.

Many businesses raise money and awareness for us by holding fun days, raffles, music events, dress down days and parties. A few businesses also give up some of their time to volunteer.

Recent months have seen:

• Principality Building Society raising £20,000

• Car washing and cake baking at Thomas Carroll

• Barclays Commercial Bank cycling from the hospice to the Severn Bridge

• Mr Creemy agreeing to donate £1 for every ice cream cake sold

• 1,000 Easter eggs donated to us!• Dress down days at Legal and

General• 4Networking’s Summer Ball

For more ideas on getting your work colleagues, line managers and staff involved, please visit:www.tyhafan.org/corporate or contact Diane Stringer on 029 2067 2080 or email [email protected]

www.tyhafan.org/events

For tickets contact Mared Evans, Events Fundraiser

Tel: 029 2067 2081 Email: [email protected]

Kindly printed by Hartley Wilprint


Tuesday 23 June saw the culmination of a number of events during the month in which we paid tribute to our volunteers for all of the hard work and commitment they have shown over the years.

Some of our long-standing volunteers and supporters were invited to a reception and lunch at the Welsh home of TRH The Prince of Wales and The Duchess of Cornwall.

The Prince has been patron of Ty Hafan since 2001.

“I am proud to have been associated for eight of the ten years with a charity that was established in Wales for Welsh families and continues to offer comfort, care and support to their children, helping them make the most of the time they have left together”, commented His Royal Highness in January of this year.

Over 100 volunteers and supporters arrived at Llwynywermod, in Carmarthenshire, to meet the Royal Couple and to talk about why they have given their valued support over the years to one of Wales’ favourite charities.

“A small group of us formed the Fabian’s Bay Friends of Ty Hafan group and started fundraising well before the hospice was even built”, said Colin Hodges from Swansea. “We were aware that many families of life-limited children and young people from across Wales, including the Swansea area, were in desperate need of help and support. We were greatly honoured to be invited to the Welsh home of Their Royal Highnesses. They were both charming and extremely interested in hearing our stories and experiences.”

honoured at Prince's home

Blair Lundie from Nelson, in the Rhymney Valley, has run many miles for Ty Hafan by completing 13 marathons and raising almost £40,000. He also volunteers his time and energy helping out at our many fundraising events. “It was a tremendous experience meeting Their Royal Highnesses and also to have the opportunity to meet up with other volunteers who all share a common aim and commitment”, commented Blair.

The month began with Volunteers Week when Ray Hurcombe, Ty Hafan’s Chief Executive, publicly thanked all volunteers and supporters for their help over the last ten years.

Over 200 volunteers also accepted an invitation to a special Garden Party in their honour held at the hospice in Sully on Sunday 21 June.

If you would like to know how you could become a volunteer or ambassador for Ty Hafan please contact Gaynor Taylor on 029 2067 2095 or visit www.tyhafan.org/get-involved

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newsroomTy Hafan SuperheroesWe asked you to be Becky’s Superhero for a day and many of you jumped, flew and crawled at the chance! With over 200 schools, work colleagues and community groups using their special powers to help raise over £35,000 for Ty Hafan Day, which was held on Friday 1 May, the event proved to be a resounding success.

The dynamic duo in the image below is Connor (Superman) and Dad, Peter (Batman) who regularly takes part in Ty Hafan events. What is even more poignant about Connor's help on Ty Hafan Day is that he has been going to Ty Hafan since it first opened its doors ten years ago.

providing care, being there

How much fun can you possibly fit into one day?The answer is lots when you are lucky enough to take part in the annual Sibling Fun Day at Ty Hafan!

Over 30 siblings aged between five and 11 arrived on the morning of Saturday 20 June to be briefed on the theme for the day which was to be – yes you’ve guessed – Birthday Party!

Apart from making the official Birthday banner, the youngsters played party games such as:

• rolling a giant dice for a six and then having to try and eat a crunchie on a plate with a plastic knife and fork

• eating a jam doughnut without licking your lips

• seeing how many marshmallows you could get in your mouth and still being able to say ‘fluffy bunny’

• seeing how many dry crackers you could eat without having a drink of water

… and lots more, including the now famous water fight.

www.tyhafan.org Ty Hafan - the family hospice for young lives. St. Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff CF5 6ES Tel: 029 2067 2060 Fax: 029 2067 2061 Registered Charity No: 1047912. Ty Hafan® is a registered trade mark. (jul09)

ty hafan cwtch newletter

Documents

young family

little fiona

nature of ty hafan

care services

barry island family

young people

samantha thomas

s of life